My story - I was diagnosed with levodopa-responsive dystonia ten years ago and going low-salicylate five years later changed my life.
For information on dystonia or to make a donation to dystonia research, visit the Dystonia Foundation https://dystonia-foundation.org.
I was diagnosed with idiopathic blepharospasm in my mid 20s. The dystonia affected my eye muscles, neck, and jaw area, and eventually moved to most other muscles in my body including my back, hands and thighs. I was treated with an anticholinergenic, bentztropine, for 4 years, until I got a second opinion. That neurologist diagnosed me with levodopa-responsive dystonia after doing a drug response trial in my early 30s.
This diagnosis has been challenging for me, but I have learned plenty over the ten years. The levodopa was a great treatment for me, but I still struggled with stomach and back pain, as well as skin issues and wild allergic reactions. I eventually went on a low-salicylate diet which cleared these other symptoms. After 2 months into the diet, I realized that my dystonia had improved drastically. For the most part, I no longer treat with levodopa, unless I have a flare up. Sometimes, I'll take the levodopa for a few weeks, and sometimes up to a few months until things calm down. I think a flare up depletes me from the dopamine, and it takes a while for normal healthy levels to resume.
I have not taken any genetic tests to verify I have the LR-dystonia genes (I don't think they were available when I was diagnosed). I do have a family member (great aunt) who had the blepharospasm and responded well to levodopa. While LR-dystonia usually starts in childhood, there are plenty of young adult cases available to find online which aligns with my story. Alcohol also suppresses my spasms, another clue for the LR-dystonia diagnosis.
In addition to a low-salicylate diet, I do not use any NSAIDs like ibuprofen or aleve anymore, and I maintain a fragrance-free home and life. I will occasionally use muscle relaxers during a flare-up (I've used about 10 pills in five years - so very, very low use).
This information is provided to share my story. I do not offer medical advice or consulting. The best doctor to treat for dystonia is a movement-disorder neurologist - try to find one that does not specialize in Parkinson's Disease only. While there is some overlap, I recommend talking to someone who actually knows about and studies dystonia. If you don't have access to that specific of a neurologist, a normal neurologist should do. While visiting a doctor that specializes in muscles seems logical, this is a disorder of neurotransmitters.
The velvet bean I took for five years before low-sal, and occassionally now, is Now Dopa Mucuna https://amzn.to/3PzbV6i (affiliate link).
Provided for visual learners, improved accessibility, and for translating the page
[Real spasm!] Hi, welcome. I'm Sarah. And this is low-sal-life where we talk about anything aspirin or salicylates sensitive related. And today we're going to be talking about me and one of my symptoms that I have I have levodopa-responsive dystonia, which is a muscular condition. And I've just kind of mentioned it in other videos, but I've never really had a whole video that's just dedicated to dystonia. So we're going to talk about that today. I've been going through emails and answering questions, and some things come up often. And so I just wanted to kind of talk about it. I also, as you've noticed, I hadn't made a lot of videos this year. It wasn't because I quit. I was really sick December through February, I got something. And then I ended up with a huge dystonia issue in June that put me in bed for two full weeks. And so I spent a lot of time thinking about what I wanted to say in this video. So thanks for joining me today. Let's get started. So this was one of the questions. In one of your YouTube videos. You mentioned how removing salicylates from your diet cured your leg cramping/ contractions. I also have eczema of the lips. When I eat salicylates, my lips start peeling, then my legs start to contract later in the day. This is not a coincidence. Can you tell me more about your experience with leg muscle issues and diet? So thank you for emailing me. And there's another usual email that I get, which is what do you do for maintenance.
So first of all, we'll talk about what dystonia is and kind of how I've found out about it, how it came into it and how I finally got a diagnosis. When I was 24 or 26. Somewhere around there, 2006. I ended up getting, I traveled to Costa Rica and Panama and I came back really sick with Helicobacter pylori, it's an infection of the stomach lining, I ended up with two ulcers, and I ended up with maybe a C. diff infection, I got treated for H pylori. And then about six months later, I relapsed and did another treatment of antibiotics. It was on the second round of antibiotics, where I was just on the very tail end of it -and my dystonia started. So what it first started out with it was just muscle twitching in my face. And actually just started out on the front, I started getting it on the right side, and it kind of just felt like like having a seizure, but you are completely alert and awake for it. So very weird feeling. It was only on the right side of my body. And so of course naturally, I was worried about stroke, maybe I'm having a reaction to the antibiotics that I was on. And it was just a really uncomfortable time. Well, over the course of the week, it ended up coming up all the way around my face. So it affected both sides of my face. And then eventually it moved into other parts of my body. Over the course of maybe four years. It started affecting my neck and my back. I have them in my arms, I have spasms in my legs. I have them in my feet. I haven't ever found the way diaphragm, just all sorts of places. One thing about dystonia is that it's, it's hard. It's not very common. It's underdiagnosed. And people - mine started in my eyes, basically, if it goes often, and sometimes for a long time. So some people can have so bad that, you know, their eyes are they're considered functionally blind, their eyelids are always shut, and until the muscles relax. And so mine are a little bit more rapid, where. When I'm exposed to like loud noises, bright light, really extreme fragrances, I'd end up having these muscle spasms and it was mostly in my eyes. But I also get them in my jaw and in my neck. So if I if I trigger it just to show somebody that I'll end up having them again. So the beginning of those are induced and the last part is not - so anyway, it's uncomfortable. I've had lots of issues. Some people used to call me Blinky, just as an endearing term because it was just so frequent. And I had to figure out how I was going to drive and work and do all this stuff. Dystonia can be very, very debilitating.
When I initially went in. They were worried about a little bit worried about seizures and epilepsy. My dad has seizures. He's epileptic, and so they were kind of worried about that. Over time, I saw another neurologist who didn't take me very seriously. And actually, I ended up giving up after this. But after the MRI, they ruled out other things. And she ended up diagnosing me with blepharospasm. So blepharospasm, means basically closure of the eyelids. And I was satisfied with that, but she didn't give like any more than that. She actually listed as idiopathic meaning like without a cause. And she also in the doctor's notes that I saw later, she didn't ever mentioned this to me, but I ended up having my records transferred to another clinic, which basically said that it was probably due to stress, and, you know, basically it was in my head. Now there can be a dystonia that can be psychologically-induced, you know, just by state of mind or imbalance in mental health. It can be an output of that, but that wasn't my case. So I ended up, I initially started off in like this anti-seizure medicine, which also treats migraines. I was having about four or five migraines a week during that time. And then this woman that gave me the idiopathic blepharospasm diagnosis, gave me an anticholinergic, Benztropine, it was the name of it. I don't remember the commercial name for that. So I took that for four years. And after I stopped seeing that neurologist, my primary care physician would just renew it for me on a regular basis. And it kept my eyeballs open so I could drive. But it was so bad, I could not drive I couldn't I couldn't hold a pencil very well. I couldn't exercise very much. I was in a lot of pain. And so it was just a really hard and really bad time.
About year four, my primary care physician who was awesome. She was great. She left the practice, unfortunately. But she was like, I can't just keep assigning this to you without like a proper diagnosis. I want you to go see a neurologist again. And I was like, I have a proper diagnosis. It's “blinking eyes with for no reason”. From a neurologist, like, isn't that good enough? She was like, I'd like I'd like you to go see another neurologist. So she recommended so this is the third neurologist, I went and saw this is also different than the two eye doctors I went and saw for it as well. So I ended up going to this doctor and she was amazing. And within sitting down in her clinic within five minutes, she thought she had a diagnosis for me and I was just like, well, I didn't expect that. And it was actually very liberating. And I was very happy. And of course, I was like, Yeah, I'll, I'll try and do a drug trial with you and see if it helps. What she recommended was that I had levodopa-responsive dystonia, and this was very interesting to me, because I was very familiar with levodopa. My dad actually has Parkinson's Disease. We actually started our he started his Parkinson's symptoms when I started my muscle spasms, and there was a lot of overlap and similarity between them. And so I was already very, you know, four years of Parkinson's study I was very aware of, of what it was, and about levodopa. So when she said, I could possibly have levodopa-responsive dystonia I thought that that was pretty crazy, but like not far-fetched, especially since my dad has a levodopa issue too, when I was instructed to do is do a trial of levodopa, which I tested over the course of basically two weeks, but you start with a small dose and you bump up and then if your symptoms get better, than they diagnose you with levodopa-responsive dystonia. And so that was a big shift for me to be switched from just idiopathic blepharospasm to an actual dystonia diagnosis.
Dystonia is weird, and it's kind of one of these conditions that we defined by the symptom. So there could be a lot of different reasons that cause dystonia, but we kind of group them by either the muscles that they affect, so like cervical will likely affect the neck and spine. The blepharospasm is still a type of dystonia, it's just affects the eyes. Dysphonia is another one that when is when your vocal cords will have a muscle spasm and then you lose your voice. I used to lose my voice all the time, all the time. And once I started my levodopa treatment, I don't think I've really had have lost my voice since then. So that's been pretty awesome.
So that's my diagnosis. So if you're coming here and you have levodopa-responsive dystonia, I'll let you know a little bit about what, what we've done as far as, like what I have. I know that since then, there has been a lot of research about genetic tests. So I do not have any genetic tests that show that I have the levodopa-responsive genes. As a result, I've been a little hesitant to participate in levodopa-responsive communities. Because basically, the only way that I've gotten my diagnosis is I have these symptoms. I tried this medicine and it responded, and therefore I have had that condition. So I've never done the testing. I was really skeptical for about four years, if that's even what I had because the levodopa-responsive dystonia tend to show up earlier in childhood. And I did not have that it didn't start for me until I was 26/24. I don't know - 24. And then it's also genetic. And so I didn't know anybody in my family that had it. But I later was talking to my great aunt in Costa Rica over I think it was Skype then. And I she had she had the same thing. It and she she eventually got on levodopa, and her symptoms got better. So there is another person in my family that has that. So that's another little checkmark to say that it probably is levodopa-responsive dystonia. There's also one little weird, quirky thing, too. It can also be diagnosed as alcohol-responsive dystonia. So if you drink alcohol, and your muscle spasm was getting better then that's like another like, it's like another name for it. But obviously, if you drink alcohol, as like a treatment, that that's not a very good option. So that's just like one of those other little weird things. But my muscle spasms get way better when I drink. So, you know, going to a party in the evening, I found like a coping mechanism. Like, if, you know, there's a lot of smells, and a lot of noise and a lot of stuff like that. So what ended up happening was, I'd have a drink or two and I’d feel a lot better and my muscles were a lot, lot better, they were much more relaxed. So that was another coping mechanism that I had figured out. Go Science!
I think that covers everything about what dystonia is just basically muscle spasms, if you can think about it, and they can be rapid. They can be rapid, it can be kind of fluttery feeling, they can be really hard and rigid, they can be repetitive, there's, you know, they can be so rigid that it like twists or pulls your muscles in a certain way and puts you in bed for two weeks because you, you know, you have no control over it. And it's kind of like watching an alien inside of your body. It's really weird. I've had I had a muscle spasm over here in my arm recently. And like, normally, that muscle wouldn't move unless you were moving other muscles in your arm. And so you can sit there and you can watch this little muscle just have a party all by itself and none of the other muscles are moving. And it's just, it just looks like just an alien inside of there. And you're like just waiting for something to burst out of your skin. But no, it's just you, it's just your muscle. So that's what that is.
I do exercise, I find that walking especially triggers the muscle spasms in my legs. And so when I come back inside, my muscles will kind of go, you know, kind of have like this little rhythmic, soft, repetitive motion for quite a while. It'll eventually die down after about an hour. So that's something that's kind of annoying. It is a little bit of a deterrent to want to exercise. Now, exercise is important for people with dystonia and maintaining your muscle strength is really important. So do try and figure out better ways to exercise. I don't really have that issue with swimming so much. Unless maybe I do like a sprint or something like that, then then I'll get muscle spasms.
It's been challenging having dystonia and I know that I've always had like a light case like obviously didn't have a child. Immediately got on to at least a suitable treatment and then a very good treatment. The levodopa was a good treatment for the anticholinergic Benztropine was adequate. You know, there's it's just challenging. One of the hardest things I had was being able to just write in class, I ended up signing up for like disability testing. And so I was able to like type my answers out on a computer, which was much more comfortable than trying to like hold a pencil because basically, like, I'd end up with like this claw of death, and, you know, basically, I couldn't move my hand very well. So that was something that was always challenging. And then sometimes I'd have issues driving where I have to pull over and have somebody else drive or I would just not be able to drive at all. So those were challenges that I had with the dystonia.
But this is the reason I'm making this video. And this is the reason I have this low-sal channel because I don't really know very many other people. I don't know anybody else, except for this one who wrote in and a few other people that have been writing in since they've watched some of my videos. But the thing is, my dystonia, I will always have my dystonia, that's never gonna go away. I'm never going to be cured of it. But I control my dystonia symptoms, by eating a low-salicylate diet. I had other stomach issues, skin issues, migraines, all sorts of things, and cutting out mostly fruits, vegetables, and fragrances. Cutting those out of my diet and lifestyle has immensely reduced my dystonia and muscular contractions that I have. And to the point where I've been able to get off of my normal levodopa treatment. This was amazing. So I just want to put that out there. There's lots of information on my site on how to do a low-sal diet. And I just want to give you hope that there's there's there's things to do besides just taking muscle relaxants and trying to, you know, figure out how to be I don't know, biochemist and geneticists to figure out what the cure for dystonia is. So if you have dystonia, and you've tried playing around with what foods affect, you leave comments down below my initial response to my disorder was to exercise more and to eat healthier. And my idea of health was to eat, you know, more smoothies and eat more antioxidants and have, you know, lots of fruit and flavors and fiber and all that stuff. And it ended up making things just worse. So, alright, I want to show you a couple of things. So, people have asked me how I manage my dystonia. And like I said, I actually had an issue for a full month where I was having a reaction. And I just thought I had overdone it, and it hurt my back. But it ended up being a dystonia flare-up for me, which just put me in bed for two full weeks, and then basically, super lightweight activity in at the end of June. And then July one, I basically felt so much better. I started swimming every single day and had a great summer, but June really sucked.
So I want to talk about what I do to manage my dystonia. So first of all, let's talk about the trigger.
I don't know. I don't know. I'm almost embarrassed to say but I I was I was trying out a couple of different foods at like the tail end of May in June, and I was over at my dad's house and they have access to a certain type of cream. That is just heavy cream. It doesn't have any like preservatives in it or anything. And then I miss my dairy farmer here. And so I picked up Darigold creamer with carageenan in and I never really thought that carageenan and it had salicylates in it. It is it has seaweed in it. But I ended up using that for the full month or about three weeks in June pretty consistently. And I didn't think it was a salicylate reaction because I just don't have flared up really early
in the morning. And so at that point, all I had was coffee and cream and both of those are like I have my decaf coffee often without any issues. And I wasn't having anything... I was kind of got like that little wobbly ear feeling that I get when I have a reaction but nothing really too severe, but it was definitely a buildup of salicylates. There was a couple other foods that I was testing out as well. So after two weeks in bed, I went back on mostly all meat diet and cut out all these other questionable foods. And I saw improvement but not a ton of improvement. Once I cut out the cream, and switched to I finally connected with my farmer once I switched to his cream. I got progressively better like within a couple of days. So that's what put me up had recently and that sent him Darigold creamer with the carageenan and I have also been related to my illness in December when I didn't have access to cream. Then I switched it out with Darigold creamer. And then I also had this like walking pneumonia like two years ago and my husband and I were really sick, but I had a really hard time recovering. And during that time, I did not have a local farmer. So I was using this Darigold creamer And I think that it also made me sick longer than I needed to be. So I just, this was just like a normal food that I thought I had tested, but I clearly didn't. So it could be something like really small like that, that. I mean, that was just that was the one my little Trojan horse that got by me. After I got my diagnosis, I was a little bit.
I was definitely like a naturalist at that point. And so I was really skeptical about wanting to take levodopa as a pharmaceutical. So I had talked with my new neurologist, if I could do a natural version, and so I ended up getting this this is dopa mucuna. So one capsule, those has 60 milligrams of levodopa. So it was less than a normal dose. So I would take one or two of those a day when I was actively having dystonia, before my low-sal diet. So I would do that. When I went low-sal actually stopped taking this because I knew it was from a plant and I didn't want to mess up my elimination diet. So I stopped taking it. And I was a little twitchy at first, but by the time I decided I probably should add it back in, I noticed that I wasn't having any muscle spasms. So that's when I realized that, my dystonia was affected by the salicylates - and so that was really great. But every once in a while, I will have salicylates accidentally in the case of like the June situation. So what I ended up doing was after two weeks, I thought I just hurt my back. But I didn’t! After about two weeks, I started taking you know, I went on very low-salicylate diet. And then I also started adding these I found it really challenging when I was swimming for the two months in July and August that I was still having a lot of flare-ups like with my dystonia. And so there was a lot of fragrances at the pool, you know, from like sunscreen. And I also don't know if I'm affected by chlorine, it might have been making it challenging to process salicylates a little bit. And then of course, when you exercise you have like more histamine in your body and that kind of thing. So I ended up taking the levodopa for the full like three months. And I'm I'm back off of it, I haven't taken it since I've stopped swimming. So you know, that was kind of a challenging time. Other things that can contribute to dystonia too. And one thing that I always keep an eye on is making sure that I get enough sleep. So that was always I always knew that that was a thing before low-sal and that's something that I absolutely still keep an eye on is making sure that I get my eight to nine hours of sleep even when it's really hard. Even when you're working at ton like I have this year!